Caregiver Corner

Finding Your Way With LGS

“Getting the LGS diagnosis was not comforting, especially at first. But what it did do was open up doors to opportunities—different medications to try, different people to meet, and connections with other parents who have children with LGS. It gave us a community, and I'm very grateful for that.”

Jackie, mother of teenage daughter Addie

Despite all the uncertainties of caring for someone with Lennox-Gastaut syndrome (LGS), you can be sure of one thing—what works for one person may not work for another. Getting a diagnosis as early as possible is helpful. With LGS and all it entails, an early diagnosis may provide treatment options and support services you wouldn't know about otherwise.

Caring for someone with LGS brings you into a community of patients, caregivers, and medical professionals who can provide support and knowledge—from early diagnosis to treatment. There are many opportunities to connect with others in similar situations, and doing so will likely benefit everyone involved.

Important Safety Information

See Medication Guide and full Prescribing Information for complete information.

ONFI is a benzodiazepine medicine. Benzodiazepines can cause severe drowsiness, breathing problems (respiratory depression), coma, and death when taken with opioid medicines.

Do not take ONFI if you have a known allergy to ONFI or its ingredients.

ONFI can make you sleepy or dizzy and slow your thinking and motor skills. This may get better over time. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ONFI affects you. ONFI may cause problems with your coordination, especially when you are walking or picking things up.

Do not drink alcohol or take other drugs that may make you sleepy or dizzy while taking ONFI without first talking to your healthcare provider. ONFI may make your sleepiness or dizziness much worse.

ONFI can cause withdrawal symptoms.Do not suddenly stop taking ONFI without first talking to a healthcare provider. Stopping ONFI suddenly can cause seizures that will not stop (status epilepticus), hearing or seeing things that are not there (hallucinations), shaking, nervousness, and stomach and muscle cramps.

ONFI can be abused and cause dependence. Physical dependence is not the same as drug addiction. Talk to your healthcare provider about the differences. ONFI is a federally controlled substance (CIV) because it can be abused or lead to dependence.

Serious skin reactions have been seen when ONFI is taken with other medicines and may require stopping its use. A serious skin reaction can happen at any time during your treatment with ONFI. Call your healthcare provider immediately if you have skin blisters, rash, sores in the mouth, hives or any other allergic reaction.

Like other antiepileptic drugs, ONFI may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any symptoms of depression, especially sudden changes in mood, behaviors, thoughts, or feelings, and especially if they are new, worse, or worry you.

If you are pregnant or plan to become pregnant, ONFI may harm your unborn baby. You and your healthcare provider will have to decide if you should take ONFI while you are pregnant.

ONFI can pass into breast milk. You and your healthcare provider should decide if you will take ONFI or breastfeed. You should not do both.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking ONFI with certain other medicines can cause side effects or affect how well they work. ONFI may make your birth control medicine less effective. Talk to your healthcare provider about the best birth control method to use. Do not start or stop ONFI or other medicines without talking to your healthcare provider.

ONFI oral suspension should be kept in its original bottle in an upright position and used within 90 days of first opening the bottle. After 90 days, safely throw away any unused ONFI oral suspension.

The most common side effects of ONFI include: sleepiness; drooling; constipation; cough; pain with urination; fever; acting aggressive, being angry or violent; difficulty sleeping; slurred speech; tiredness; and problems with breathing.

The product information provided in this site is intended only for residents of the U.S. The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a healthcare provider.

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